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Web
Link
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Short
Description
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Governmental
(or Governmental Funded) Resources
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The governmental contractor that handles concerns
regarding the quality of care provided to Medicare beneficiaries in Oregon (except for care provided in dialysis
facilities). For dialysis related care
concerns, contact the Network at the above phone number.
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This web tool gives you detailed information about Medicare-certified
dialysis facilities and lets you compare facilities in your area and around
the country.
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The Official Governmental Web site for people
with Medicare.
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The governmental contractor that handles concerns
regarding the quality of care provided to Medicare beneficiaries in Alaska and
Montana (except for care provided in dialysis facilities). For dialysis related care concerns, contact
the Network at the above phone number.
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The National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) conducts
and supports research on many of the most serious diseases affecting public
health. The Institute supports much of the clinical research on the diseases
of internal medicine and related subspecialty fields, as well as many basic
science disciplines.
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The governmental agency responsible for the
enforcement of the Federal privacy law HIPAA.
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The governmental contractor that handles concerns
regarding the quality of care provided to Medicare beneficiaries in Washington and
Idaho (except for care provided in dialysis facilities). For dialysis related care concerns, contact
the Network at the above phone number.
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Patient Support Resources
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The American Association of
Kidney Patients (AAKP) is a national non-profit organization founded by
kidney patients for kidney patients. AAKP strives to educate and
improve the health and well-being of chronic kidney disease (CKD) patients,
those on hemodialysis, peritoneal dialysis and transplant recipients
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The mission of the American Kidney Fund (AKF) is to provide
direct, treatment-related financial assistance to kidney patients who
are in need, and to provide health education to people with, or at-risk for,
kidney disease.
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The American Diabetes Association
provides diabetes research, information and advocacy. Founded in 1940, the
American Diabetes Association conducts programs in all 50 states and the
District of Columbia, reaching hundreds of communities.
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With more than 22,000 dialysis and pre-dialysis
patients making up its membership, Dialysis Patient Citizens (DPC) is working
to improve the quality of life for all dialysis patients through education
and advocacy. They are a nationwide,
non-profit, patient-led dialysis organization with membership open only to
dialysis and pre-dialysis patients and their families.
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Home Dialysis Central is a one-stop, online
source of up-to-date, information about home dialysis—in all its forms—for
people with kidney disease, their families, and the healthcare professionals
who provide kidney disease care.
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This site was developed by the
Kidney Medicare Drugs Awareness and Education Initiative to provide timely,
consistent, reliable, and up-to-date information about Medicare and Medicare
Prescription Drug Coverage (Part D), specifically for kidney patients and the
healthcare professionals involved in their care.
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Kidney School is an interactive, web-based learning program in 20-minute
modules. It was designed to help people learn what they need to know to
understand kidney disease and its treatment, adjust
to kidney disease, make good medical choices, and live as fully as possible.
You decide which modules to visit and when––so what you learn is entirely up
to you.
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Life Options is
a program of research, research-based education, and outreach founded in 1993
to help people live long and live well with kidney disease. A national panel
of doctors, researchers, patients, nurses, social workers, dietitians, and ESRD
Network directors reviews all Life Options materials and helps guide
research.
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The Medical
Education Institute (MEI) is a mission-driven, non-profit, operating private
foundation dedicated to helping people with chronic diseases learn to manage
and improve their health.
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The National Kidney Foundation, Inc (NKF)
is a major voluntary health organization dedicated to preventing kidney
disease, improving the health and well-being of individuals and families
affected by kidney disease and increasing the availability of all organs for
transplantation.
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The PKD Foundation is the only organization, worldwide, dedicated to
promoting research to find a cure for polycystic kidney disease (PKD) and
improving the care and treatment of those it affects.
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The Renal Support Network
(RSN) is a nonprofit, patient-focused, patient-run organization that provides
non-medical services to those affected by chronic kidney disease (CKD). RSN
strives to help patients develop their personal coping skills, special
talents, and employability by educating and empowering them (and their family
members) to take control of the course and management of the disease.
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Transplant Resources
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Donate
Life America assists in mobilizing the transplant community to educate the
American public on the need for organ, eye and tissue donation and motivating
the public to make an actionable donor designation. The organization
publishes brochures, program kits and other materials; provides technical
assistance and referral services; coordinates the national campaign for
organ, eye and tissue donation; identifies measurable best practices and
leads the Donor Designation Collaborative.
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The National Donor Memorial located in Richmond, Virginia, pays homage
to America's organ and tissue donors--people whose special generosity made
new life possible for thousands of children and adults.
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A governmental funded program
providing financial assistance to those who want to donate an organ. It mission is to reduce the
financial disincentives to living organ donation. It operates a nationwide system to provide
reimbursement of travel and subsistence expenses, and other non-medical
expenses, that may be authorized by the Secretary of Health and Human
Services, to individuals being evaluated for and/or undergoing living organ
donation. Priority is given to those individuals who cannot otherwise afford
the expenses.
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Transplant Living is a project of the
United Network for Organ Sharing (UNOS), a nonprofit organization that
maintains the national Organ Procurement and Transplantation Network
(OPTN). It offers information and resources
on transplant.
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UNOS has a broad mission. One of it key responsibilities is to
facilitate organ sharing among transplant centers, organ procurement
organizations and histocompatibility laboratories
across the U.S.
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Other Resources
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The NCC provides centralized
coordination and support for the ESRD Network Program. The NCC's primary
responsibilities include collection, maintenance and distribution of ESRD
information; coordination of national activities, including training
initiatives; facilitation of special projects, and administrative support
services, such as the planning of meetings and summary reports for ESRD Networks
and CMS' ESRD Network Program.
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The AV Fistula First Breakthrough
Coalition (FFBI), consisting of the Centers for Medicare & Medicaid
Services (CMS), ESRD Networks, and the entire renal community, works together
to increase the likelihood that every suitable patient will receive the most
optimal form of vascular access - which, in most cases, will be a native arteriovenous fistula, or AVF. The focus of the FFBI is
also on reducing catheter use and vascular access complications.
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RenalWEB
is a web site for the dialysis industry and community. With hundreds of web
sites containing dialysis product information, RenalWEB
has function as a "daily newspaper" for useful information, new
products, services, and educational resources since 1999.
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